網誌文章搜尋建議

給多發性硬化症MS病友和親友的建議:
如要搜尋站內相關文章可多利用
"搜尋此網誌的文章內容"的功能,這樣就可以快速的找到你想要得資訊而不需要從第一篇開始看了.
有關CCSVI(靜脈血管窄化及手術的資訊)可在相關連結以及相關MS blog內

推薦頻道:Gimmy a break

2010年8月31日 星期二

擁抱 : 一個強而有力的關懷

非擁抱莫屬

當你心中感到沮喪,愉快,興奮,難過,感激的時候,你會如何抒發你的情感呢?

是自己一個人?
還是想找個人一同分享這份情緒或情感?

一個人躲在被窩裡掉淚?
還是緊抓著或緊抱著某個東西肆無忌憚的放聲大哭?
擁抱是一件很美妙的事,在擁抱的瞬間,便進行了一場超越語言的情感交流,是友善、安慰、分享以及明亮且溫暖無形的事物。
Hug 是一個極能夠撫慰人心靈的一個自然表現,但是在東方的社會中,傳統的觀念讓我們不輕易的表達自我的情感,因為壓抑的緣故,使得大家也逐漸的成為了一個壓力鍋。

大家應該都看過Free Hugs 的影片或活動在街頭舉著牌子(免費提供擁抱)的影片,不但獲得了 YouTube Video Awards 2006的Most Inspirational / 最激勵人心獎,影片中所有參加活動的路人們,他們每一個人願意拋棄矜持的勇氣,以及熱情擁抱時所露出的放心微笑,卻都是那麼真實。你曾經感受到那份擁抱的力量嗎? 那可以是溫柔慈悲的,也可以是能夠撼動山河的。

是的,我曾經深深地感受過,不論當時的我是施予擁抱還是被擁抱,我都能夠深深地感受到那份力量和情感!

曾經是 家人,朋友,老師,醫師,病友,社工 都有著不同的情感。

也許一份擁抱,能夠讓一個充滿絕望即將想不開的人獲得希望。
也許一份擁抱,能夠讓一個筋疲力盡的人再度充滿力量。
也許一份擁抱,能夠讓一個壓抑很久的人充分宣洩他內心的情緒。

人都不希望寂寞,也不希望孤獨,有時候需要和其他人一同分享,若不好意思用說的話,就直接擁抱吧!
別吝惜施予你的情感,想表達的時候就勇敢的去表達吧!
也許,你會感受到"豐富",在你擁抱之後.......
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2010年8月29日 星期日

三個月內做了兩次靜脈擴張術病患的狀況

國外 病友 Linda的case


第一次:頸靜脈阻塞已擴張 blockage in my jugular veins were cleared.There was a 35% in the right jugular vein, as suspected. 左邊頸靜脈糾結The left vein had a clot. It would not remain open ,so a stent was inserted.在左邊頸靜脈安裝了支架

第2次:一位氣球擴張在azygous vein 胸腔靜脈 and sigmoind sinus(這個部份是相當不容易處理的)

有關於Sigmoid Sinus 可以利用我網誌內搜尋的選項查詢就知道了

想知道更多嗎?
http://www.youtube.com/user/mammananny#p/a/f/1/j6LRZ0cavpw
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2010年8月28日 星期六

研究人員急切的希望能夠立刻展開MS實驗性的手術

Launch MS clinical trials immediately, researcher urges

研究人員急切的希望能夠立刻展開MS實驗性的手術

越來越多加拿大MS患者遠赴 保加利亞,波蘭, 印度, 墨西哥, 美國 去擴張他們狹窄的靜脈,

而所帶回來的消息都是立刻反應的結果如:手腳不再冰冷,變得溫暖, 視力更清楚, 疲累感大大的減少

雖然研究MS的人員都全力把焦點放在免疫細胞攻擊神經上

但是Juurlink也發現即使沒有免疫細胞影響的情形下,髓鞘也會損壞, 這些現象讓他想知道是什麼原因造成髓鞘的損壞

Juurlink主要的研究是中風, 他知道當腦部的血流量減少的時候,首先大腦神經細胞組織所受到的影響就是髓鞘, 而髓鞘的損壞正是在MS病患中大腦被發現的主要徵兆

一位在Cameco MS Neuroscience Research Centre in Saskatoon的科學家假設 血流量的減少可能造成大腦的病灶(白色的班點),這些病灶能夠因為增加血流量而進一步被預防!

Juurlink提到:雖然目前的結果不是一個好的對照實驗的結果, 但是我不了解的是為何不趕緊展開MS實驗性的手術來做進一步的證實?

Bernhard Juurlink在1998就提出MS可能和腦部以及脊髓血流量減少有關的假設!
------------------------------------------------------------------------------

所以:

髓鞘的損害是確定的

損害的原因可能有兩種 一為
免疫細胞的攻擊 一為血流量減少

完全確定髓鞘損害的原因為何? 或者是那個原因所佔的比重比較大的情形下?

又目前對於
免疫細胞攻擊的控制 尚未到達一個完全的控制的情形下(免疫系統的機制太過複雜)

若能夠增加血流量(打開窄化的靜脈) 來先一步預防
髓鞘的損害
這樣更能夠降低MS病患肢體障礙的機率和風險

打開窄化的靜脈(氣球擴張術)是目前已經相當成熟的治療方式

何不讓MS病患減少一些對未來生活的恐懼, 保有一份
順暢和愉快生活品質呢?

---------------------------------------------------------------------------------------------------------------------

引述原文:

Clinical trials of the controversial liberation treatment for multiple sclerosis should happen immediately, says a former University of Saskatchewan researcher who proposed an eerily similar theory more than a decade ago.

Bernhard Juurlink published a hypothesis in 1998 that MS is related to decreased blood flow in the brain and spinal cord.

Bernhard Juurlink在1998就提出MS可能和腦部以及脊髓血流量減少有關的假設

"It was very difficult to get anyone interested in this idea — the idea was easily testable by, for example, looking for blood flow in white matter in MS patients," Juurlink said in an interview this week. "I tried to first interest clinical colleagues to image brains of MS and non-MS patients, to look at blood flow, with no success."

Last year, Italian vascular surgeon Dr. Paolo Zamboni proposed that narrowed or blocked veins in the neck are related to MS and inflating the veins with a balloon angioplasty procedure can alleviate symptoms.

The procedure isn't available in Canada because it hasn't been scientifically validated, but Saskatchewan Premier Brad Wall has called for clinical trials, which he'd like to see start soon.

Meanwhile, a growing number of Canadians with MS have travelled to Bulgaria, Poland, India, Mexico and the United States to have their veins widened. They bring back anecdotal reports of immediate results, such as restored warmth to their feet and hands, clearer vision and decreased fatigue.

越來越多加拿大MS患者遠赴 保加利亞,波蘭, 印度, 墨西哥, 美國 去擴張他們狹窄的靜脈,

而所帶回來的消息都是立刻反應的結果如:手腳不再冰冷,變得溫暖, 視力更清楚, 疲累感大大的減少

Juurlink was at the University of Saskatchewan from 1975 until 2008, when he moved to Saudi Arabia as a founding faculty member of Alfaisal University; he serves a professor of anatomy and cell biology.

He said his research into strokes intersected with MS research during the 1990s when he started looking at the development of the cells that form myelin, the fatty sheaths around the brain's axons — portions of nerve cells that transmit electrical impulses. Damage to the myelin sheaths caused by immune cell attacks is the commonly accepted cause of MS.

MS research has almost completely focused on the immune attack, but Juurlink found reports of myelin breakdowns in the absence of immune cells. That led him to wonder what else could cause the damage.

雖然研究MS的人員都全力把焦點放在免疫系統攻擊神經上,但是Juurlink也發現即使沒有免疫細胞影響的情形下,髓鞘也會損壞,這些現象讓他想知道是什麼原因造成髓鞘的損壞

Because of his research into strokes, he knew the first tissues affected when blood flow in the brain is reduced are the myelin-covered nerve fibres — and that some of the changes caused in the brain resemble the changes in the brains of MS patients.

Juurlink主要的研究是中風, 他知道當腦部的血流量減少的時候,首先大腦神經細胞組織所受到的影響就是髓鞘, 而髓鞘的損壞正是在MS病患中大腦被發現的主要徵兆

While a scientist at the Cameco MS Neuroscience Research Centre in Saskatoon, he hypothesized that reduced blood flow could be the cause of MS lesions in the brain and, consequently, lesions may be prevented by increasing the blood flow.

一位在Cameco MS Neuroscience Research Centre in Saskatoon的科學家假設 血流量的減少可能造成大腦的病灶(白色的班點),這些病灶能夠因為增加血流量而進一步被預防!

"It wasn't covered up, but it went against the grain of what was considered to be common knowledge, that everybody knew, despite the evidence to the contrary. This was completely ignored," said Juurlink. "Once ideas are accepted, it's very difficult to get individuals to look at a problem in a different light.

"Despite what scientists claim — that they're open-minded — it's actually not the case, usually, because everybody says, 'Of course, it's an immune attack, we know it's an immune attack.' "

However, the relation of vein obstructions to MS won't be known without carefully controlled, double-blinded clinical trials, Juurlink said. "Personally, I don't understand why we don't have immediate clinical trials."

Juurlink提到:雖然目前的結果不是一個好的對照實驗的結果, 但是我不了解的是為何不趕緊展開MS實驗性的手術來進一步的證實?

Current work related to Zamboni's theory at Saskatoon's research centre focuses on whether the veins are restricted. The lead researcher, Dr. Katherine Knox, said this week her team is focusing on that work before moving on to any potential clinical trials.

The dean of the U of S's college of medicine, Dr. William Albritton, and provincial Health Minister Don McMorris have both spoken recently of clinical trials being fast-tracked.


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2010年8月27日 星期五

國際顯像導引微創治療協會 支持新的MS手術療法

Society of Interventional Radiology Supports Research for New M.S. Treatments

國際顯像導引微創治療協會 支持新的MS手術療法

Position Statement in September Journal of Vascular and Interventional Radiology Outlines Society's Stance as It Actively Promotes and Expedites Needed Research, Recognizes Potential Value of Interventional Treatment Options for Vulnerable Patients

FAIRFAX, Va., Aug. 26 /PRNewswire-USNewswire/ -- Recognizing that venous interventions may potentially play an important role in treating some patients who suffer from multiple sclerosis -- an incurable, disabling disease -- the Society of Interventional Radiology has issued a position statement indicating its support for high-quality clinical research to determine the safety and effectiveness of interventional M.S. treatments. SIR's position statement is endorsed by the Canadian Interventional Radiology Association and will be published in the September Journal of Vascular and Interventional Radiology.

(Logo: http://photos.prnewswire.com/prnh/20100127/SIRLOGO)

(Logo: http://www.newscom.com/cgi-bin/prnh/20100127/SIRLOGO)

"The Society of Interventional Radiology would like to be actively involved in developing evidence-based therapies for the potential treatment of patients with multiple sclerosis," said SIR President James F. Benenati, M.D., FSIR. "Completing high-quality studies -- for example, on chronic cerebrospinal venous insufficiency (CCSVI, a reported abnormality in blood drainage from the brain and spinal cord) and interventional M.S. treatments -- should be a research priority for investigators, funding agencies and M.S. community advocates," added Benenati, who represents nearly 4,700 doctors, scientists and allied health professionals dedicated to improving health care through minimally invasive treatments.

About 500,000 people in the United States have M.S., and SIR understands the public's desire to advance treatment for M.S., generally thought of as an autoimmune disease in which a person's body attacks its own cells. Currently, medicines may slow the disease and help control symptoms. The role of CCSVI in M.S. and its endovascular treatment (through a catheter placed in a vein) by an interventional radiologist via balloon angioplasty and/or stents to open up veins "could be transformative for patients and is being actively investigated," said Benenati. "The idea that there may be a venous component to the etiology (or cause) of some symptoms in patients with M.S. is a radical departure from current medical thinking," he noted.

"SIR recognizes the challenge and the potential opportunity presented by promising early studies of an interventional approach to the treatment of M.S.," said Benenati. SIR is moving rapidly to "catalyze" the development of needed studies by bringing together expert researchers in image-guided venous interventions, neurology, central nervous system imaging, M.S. outcomes assessment and clinical trial methodology, he added. While the use of balloon angioplasty and stents cannot be endorsed yet as a routine clinical treatment for M.S., SIR is committed to assuming a national leadership role in launching needed efforts, said Benenati.

SIR's position statement agrees with M.S. advocates, physicians and other caregivers that the use of any treatment (anti-inflammatory, immunomodulatory, interventional or other) in M.S. patients should be based on an individualized assessment of the patient's disease status, his or her tolerance of previous therapies, the particular treatment's scientific plausibility, and the strength and methodological quality of its supporting clinical evidence. "When conclusive evidence is lacking, SIR believes that these often difficult decisions are best made by individual patients, their families and their physicians," notes "Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency in Patients With Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology, Endorsed by the Canadian Interventional Radiology Association."

If interventional therapy proves to be effective, M.S. patients should be treated by doctors who have specialized expertise and training in delivering image-guided venous treatments, said Benenati. Interventional Radiologists pioneered balloon angioplasty and stent placements and use those treatments on a daily basis in thousands of patients with diverse venous conditions. "Interventional radiologists are steeped in a tradition of innovation and invention -- of pioneering modern medicine with the devices, drugs and methods to treat patients minimally invasively," said Benenati.

For more information about the Society of Interventional Radiology and to find those interventional radiologists who provide endovascular treatment for CCSVI, visit SIR's Web site at www.SIRweb.org and its Doctor Finder at http://doctor-finder.SIRweb.org/.

About the Society of Interventional Radiology

Interventional radiologists are physicians who specialize in minimally invasive, targeted treatments. They offer the most in-depth knowledge of the least invasive treatments available coupled with diagnostic and clinical experience across all specialties. They use X-ray, MRI and other imaging to advance a catheter in the body, such as in an artery, to treat at the source of the disease internally. As the inventors of angioplasty and the catheter-delivered stent, which were first used in the legs to treat peripheral arterial disease, interventional radiologists pioneered minimally invasive modern medicine. Today, interventional oncology is a growing specialty area of interventional radiology. Interventional radiologists can deliver treatments for cancer directly to the tumor without significant side effects or damage to nearby normal tissue.

Many conditions that once required surgery can be treated less invasively by interventional radiologists. Interventional radiology treatments offer less risk, less pain and less recovery time compared to open surgery. Visit www.SIRweb.org.

SOURCE Society of Interventional Radiology


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2010年8月26日 星期四

香港的300多位MS患者 可以就近檢查自己是否有靜脈窄化了

據一位病友的努力查到了香港有一家醫院和一家基金會
養和醫院

具備有靜脈擴張的能力 (lnterventional Radiology/透視微創治療)

之前我所說的靜脈擴張術就是屬於lnterventional Radiology/透視微創治療

Vascular and Interventional Radiology Foundation Ltd.
Address Unit 108 1/F, Bio-Informatics Centre, Hong Kong Science Park, Pak Shek Kok, Sha Tin N.T
Tel (852) 2655 8823
Fax (852) 2655 8822
Email virf@virf.org
Website http://www.virf.org

lnterventional Radiology 中文:
顯像導引介入治療
透視微創治療

是一系列先進醫學手術的總稱,手術的特點是利用醫學影像器材透視人體內部,然後以微型的高科技儀器經針孔般細小的皮膚傷口直達體內病源,進行徹底治療手 術。過程中病人所受的身體創傷減到最輕,嬰孩也可接受治療。

一些常見的殺手疾病,以往令醫生束手無策,或必須動大手術才能治療,現在可以藉透視微創治療醫治。其中包括﹕

中風及腦出血
.癌症及其它腫瘤
.因創傷或疾病引起的內臟出血
各類血管疾病(心血管疾病,動脈阻塞,靜脈栓塞等)


在歐美先進國家,透視微創治療已成為現代醫學不可缺的常規技術。在香港和亞洲各地,不少病人也因透視微創治療重拾健康生活。

需注意的是 : 不知道該院是否有針對頸靜脈或者是胸腔靜脈擴張的經驗,可先與該院或該基金會聯絡並和該醫師討論,病人再決定是否願意執行。

閱讀更多:

http://www.hksh.com/eng/services/clinical_diagnostic/radio/pdf/Interventional_Radiology_eng.pdf


http://www.virf.org/whats_vir_chi.html

謝謝海琴
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2010年8月25日 星期三

醫師的角度

HBO 擁愛奇蹟 Living Proof

後續~

承前 一部很棒的電影也是一段真實故事

之前請大家 用心去體會劇中病人的感受,就像是 我們目前的感受一般。

現在
換個角度從劇中主角 "醫師" 的角度去感受體會。

片中提到了醫藥制度面和病人需求的衝擊。
特別是病 人即使願意當自願者接受藥物測試卻也因為制度的關係而遭到否決,無法使用該新藥物的殘酷事實!


但是當主角"醫師"即使非常願意傾全力幫助病人,但是並不是每個病人都能夠獲得他所希望的結果時,可以體會到他內心的沮喪,無奈和力不從心。也許不是每個病人都能夠適合這種藥物,所以有些病人還是熬不過。所以,當醫師看到病人的反應不如預期甚至惡化的時候,他們的內心一定也不好受(壓力也是相當大的)。相對的,若是病人的反應良好就會振奮他們。

對醫師而言,研發治療藥物或方法是一種過程,也是學習,從過程當中學習。不論是新的藥物或者是新的治療方法。因為是新的,所以大家都不知道會有什麼結果。(因為你不會知道下個吃到的巧克力的味道為何)

病人能夠遇到這樣的醫師已經算是相當有福氣的,因為他們肯嘗試也很願意在對於新的藥物或方法的研發或實驗過程。至少是個機會和希望,是個不一樣的開端。病人不放棄任何希望,願意犧牲自己勇於嘗試新的藥物,只希望活下去的態度是一個積極且正面的態度。當然病人也非常期望自己的症狀能夠改善,即使沒有改善,也請不要氣餒。在過程當中,醫師仍會盡心盡力守護病人的生命安全。

病人和醫師都很偉大,因為你們讓世界多了一份新的希望,你們讓世界又多了解人體的奧秘。

一同加油吧!
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2010年8月24日 星期二

台大也開始對靜脈情形做MRV的檢測

由病友的訊息當中得知

台大也開始對靜脈情形做MRV的檢測是否有窄化的現象,好消息。

若經檢測後發現 頸靜脈(Internal Jugular Vein)沒有窄化,值得恭喜。

但是胸腔靜脈(Azygus Vein)是否窄化也仍需考慮。

最好都沒有任何窄化的靜脈!!
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2010年8月23日 星期一

沒有4肢的奇蹟人生 留著淚的歡呼故事Nick Vujicic


Nick Vujicic 一個生下來沒有4肢的人生
他是如何活下來的?
他對生命的意義; 我活下來就是要來鼓勵有手有腳的人
當別人對他說你做不到
他回應; Why not?
幽默的心態面對自己的遭遇

他說到最重要的部分
若你一直指是看到自己所欠缺的, 你會忘記自己所擁有的
若是人生總是一直希望我要這樣,我要那樣, 這樣一點意義都沒有
這樣只會讓自己陷入無盡的貪婪並且持續的抱怨

更重要的 他說人總是要到失去了,才知道什麼叫做珍惜

雖然他很早就體認社會的現實, 將沒有工作, 不會結婚...
但是他不會覺得自己的人生沒有價值!

MS 就是要來告訴我們:請珍惜自己所有的, 並且不要讓自己陷入無盡的貪婪

Be positive, and keep walking. Show your glory and your value!

想知道更多?
延伸了解他http://www.youtube.com/results?search_query=Nick+Vujcic

Never give up, if you want to get up from falling....
絕不要放棄, 若你想要從跌倒中再站起來!
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2010年8月20日 星期五

新的MS治療手術(CCSVI, Liberation treatment)將在加拿大展開

New MS Treatment May Be Started in Canada
新的MS治療手術(靜脈擴張術)將在加拿大展開

It is expected that Quebec may soon join various other provinces in a clinical trial that will be initiated to test the effectiveness of a new revolutionary multiple sclerosis treatment. It promises to provide relief to patients who are suffering from multiple sclerosis.

加拿大的 魁北克省 將加入其他省,展開臨床的實驗手術

Theresa Oswald, Manitoba’s Health Minister sent a letter to all the federal and territorial health ministers and she urged all of them to support the nationwide trial of the new treatment that is called liberation treatment.

加拿大的 馬尼托巴 的衛生局長Theresa Oswald 給各個省的衛生局長敦促開始全加拿大的實驗手術(靜脈擴張術)

This new treatment has been developed by Italian doctor Paolo Zamboni. He stressed that he has been able to find the way in which MS is caused in human beings. He pointed that the disease is caused by blocked veins in the neck and this leads to an excessive iron buildup in the brain.

Health experts across Canada are already supporting this revolutionary treatment. They feel that this treatment can significantly benefit the people who are suffering from multiple sclerosis.

But, some feel that no medical study has yet established the benefits of this new type of treatment. They stress that more research is needed to ensure that the treatment will prove beneficial for multiple sclerosis patients.

The new treatment is already being provided to patients in clinics in the countries like Poland, Bulgaria and India. People from various countries including Canada are going to these clinics for getting the treatment.

Many people who have received this treatment have also posted responses on the internet that the treatment has really helped in improving their condition.

更多閱讀:http://topnews.co.uk/211396-new-ms-treatment-may-be-started-canada
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恭喜第5位病人重生!

就在前天, 和第4位病友屬於同樣的靜脈瓣膜的問題,
擴張後
她覺得胸口的麻的感覺減少了,雙腿的灼熱感也改善了!!

恭喜她!

還會有更多的病友等待著奇蹟發生在自己的身上
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2010年8月19日 星期四

一部很棒的電影也是一段真實故事

HBO 擁愛奇蹟 Living Proof (Taiwan)

擁愛奇蹟

This is the true story of oncologist and researcher Dr. Dennis Slamon, the UCLA doctor who helped develop the breast cancer drug Herceptin, and his effort to keep the drug trials afloat. His inspiring journey shows the sacrifices he makes in his personal life and the obstacles that he faces to get the drug approved. Thousands of lives have been saved because of his dedication.

本片根據真人真事改編,敘述腫瘤科醫師史拉蒙致力研發治療乳癌藥方的經過,他不但為此犧牲私人生活,還要克服重重困難讓藥物通過核准。由於他的付出,讓許多癌症病患得以重生。
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除了主角的故事之外,也請大家可以多看看劇中罹癌的病人,充分的詮釋出病人的各種想法心態以及不放棄任何希望,願意犧牲自己勇於嘗試新的藥物,只希望活下去的態度。請用心去體會劇中病人的感受,就像是我們目前的感受一般。

還有藥商對於新藥開發的態度,FDA對於人體試驗的規範,要求人體實驗對照設計的嚴苛,到後來由乳癌組織會長參與人體試驗第3階段,提出該新藥物應該供給每位乳癌患者的權利。

本片可以讓大家了解藥物開發的過程非常的長久,片中道出了12年,也因為如此的長久所以也有許多病人熬不過或撐不過,片中提到了醫藥制度面和病人需求的衝擊。特別是病人即使願意當自願者接受藥物測試卻也因為制度的關係而遭到否決,無法使用該新藥物的殘酷事實!
相當於現在的我們(MS/CCSVI),病人願意接受新的治療方式,但是也有可能遭到拒絕 (ex: Canada)
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播映時間(台灣):

週四8月19日 12:35 AM
週五8月20日 上午7點
週六 8月21日 凌晨1點30分
週六 8月21日 下午2點40分
星期天 8月22日 凌晨2點40分
請用心體會!
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2010年8月18日 星期三

MS Liberation Treatment MS靜脈狹窄擴張術的相關資訊連結

MS Liberation Treatment



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2010年8月17日 星期二

第3位病友的不可思議之CCSVI結果

還記得前一篇對於第3位病友的神奇故事嗎?

另外,第3位病友的雙腳都可以抬高一些了。
在手術過程中雖然氣球擴張術並未成功(由影像可以直接看出氣球消氣後仍受到鄰近的動脈壓迫又窄回去)
可是就是這麼神奇!

昨天8/16,在第3位病友和第4位病友聊天當中得知了更令人興奮的消息
引述:

前五分鐘才跟實驗鼠3號的老婆用MSN聊天,
得知他老公神奇的變化,真是令我嚇到!
另一方面,真是替他們好高興,且高興的不得了!!
太不可思議了!!!
上一篇我有提到3號的大概,
在線上他老婆說他目前也都還可以抬腳,且愈來愈好,
目前已經可以抱著她站一分多鐘了!(手術前腳是不會動的!)
哇~~~~ 哇~~~~~ 哇~~~~~~我的天呀!!
我又問她,除了腳,還有其他地方有變化嗎?
她說"手也比較有力了!其實手術第二天就有感覺了!!!他現在已經可以用筷子吃飯了!!
我說"那術前不行嗎?
她說"對!術前是用湯匙吃飯!!
哇~~~~ 哇~~~~ 哇~~~~ 我的媽呀!!
怎麼差這麼大!!!
奇怪的是,不是沒有手術成功???
那如果手術成功不就..........天呀!!!
我跟她說,很多病友聽到這麼令人振奮的事,一定開心!



閱讀更多:
請見 天呀!天呀!~~~ 真是太神奇了!(CCSVI)

這目前最令人振奮的消息了!!

我還是要說 : 奇蹟天天在上演!!
人體的奧秘不是我們能夠清楚了解的!
若是一個機會,為何不給自己一個機會呢?


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2010年8月13日 星期五

第4位病友的CCSVI經驗

另外,第3位病友的雙腳都可以抬高一些了。
在手術過程中雖然氣球擴張術並未成功(由影像可以直接看出氣球消氣後仍受到鄰近的動脈壓迫又窄回去)
可是就是這麼神奇!

我只能說 人體的奧秘不是我們能夠一生就能完全了解的。

第4位病友的CCSVI 是屬於靜脈瓣膜的問題....

詳見CCSVI - 台灣實驗鼠4 號之手術花絮


To circle 妳也辛苦了,因為你左右對稱各刺一針.....我是一邊次兩針.....

聽說 大陸那說有很多人要包機過來台灣做這手術!...
我想大陸那邊的MS患者應該也不少...

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2010年8月11日 星期三

已有3位病友在手術過程中確認頸靜脈有窄化

截至目前為止

已有3位病友在手術過程中確認頸靜脈有窄化

1. 頸靜脈窄化的位置均不盡相同

2. 頸靜脈窄化的原因也各有差異
第1位的靜脈因為近腦部且位於血管轉折處故有些許的困難 (這種現象也在國外有出現過)
第3位的靜脈因為鄰近動脈的壓迫而無法完全擴張, 可能需要同時考慮動脈的處理 (這種現象也在國外有出現過)

3. 第3位手術後的結果雖然不成功 , 但是手術前完全不會動的下肢, 也出現了短暫的抽筋情形(動了!!)

第4位正在手術當中, 祝福她 順利成功.
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2010年8月10日 星期二

Science may prove angioplasty technique helpful in treating MS

KATZ: Science may prove angioplasty technique helpful in treating MS-

科學會證明氣球擴張術對於治療MS會是有幫助的..

Needs more experiments, data, evidences~

所以需要更多的實驗, 數據, 和證明
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2010年8月9日 星期一

為即將重生的另一位病友祝福

我,喜歡和志同道合的人一起完成共同信念的事。

這個部份在以前,就像是一同工作的夥伴,或者是合夥人,一同開創共同的事業,有著共同的理想。

可是,理想往往會因為現實環境的變化或利益衝突而改變。也因而拆夥 .... 無法持續。

其實,兩年多前,我也找到了算是真正志同道合的朋友!而且這樣的關係似乎更為長久~

我們都有相同的信念和理想:恢復自己的健康。

我們也不輕易的像命運低頭,彼此連結在一起,一同向前走。

彼此加油,打氣,相互關懷,鼓勵。

我真心祈願每一位朋友都能夠獲得他們的希望和夢想-->健康的身體

祝福 circle 順利,成功!
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2010年8月5日 星期四

MS某些症狀對應到靜脈窄化的證明

還記得之前文章提到的病友Luck lady嗎?

又一位國外的MS病友手術後的經驗分享

另一位國外的MS病友在執行靜脈擴張手術後的經驗分享

看看她的病史(從2000年就試過不同的藥物)
4 年 Avonex, (干擾素1a)
2 年 Rebif, LOTS of 'roids, 干擾素
3 年 Tysibri
6個月, Zenapax.
在今年3/3/10做了靜脈擴張術Liberation ,
在今年7/30/10 再度做了靜脈擴張術ReLiberation

這是她第2次做完的感覺:只有一個字:GREAT!
來看看她第2次的結果:

So how am I feeling just under 48 hours afterwards? In a word: Great! I had so many benefits from the first procedure, the results have been less dramatic, but no less wonderful the second time around.

1. My feet are still pink, although they are warmer than they were before. They had slowly gotten colder over these last 5 months I now realize in hindsight.
(由此可知5個月當中靜脈會再度漸漸的窄化)

2. My swallowing is back to excellent. It improved dramatically post procedure #1. It has gotten noticeably worse over the past month, although it still never got close to as bad as before #1. 吞嚥再度變好

3. Cognitive never really declined as far as my husband and I can tell. I continue to enjoy clear thinking. 認知能力變好,思緒相當清楚

4. Fatigue did get worse over these months. Never near the levels before treatment #1, but I still faded earlier in the evenings than just after the first treatment. I was up watching movies with my man until after 11:00 the past two nights. That's solid evidence I'd say.
(疲勞的感覺在第一次手術後數月的確有變壞,第一次手術後我直到傍晚才會覺得疲累,第2次手術後兩天,我的精神好到能夠和我先生看電影看到晚上11:00都沒問題。)

5. I can get out of a chair very easily! Over these months I have begun to struggle mightily to push up or grab onto something to haul myself to standing.
我可以輕鬆的從椅子上站起來,第2次手術前我還必須抓著東西來幫助我站起來!

6. My balance is significantly better. My legs are still very weak, but I can walk without the cane in the house with increasingly greater confidence.
平衡變得更好了!雖然我的腳依舊弱,但是我不用拐杖就能夠在屋子內行走


7. I can lift my legs higher. When I got into bed last night I laid down with my feet on the ground and lifted them one at a time high off the floor and rested them on the bed. Three days ago I had to drag them onto the bed with my hands.
我可以把腳抬得更高了。

8. I walked up and down a flight of stairs today. Because of the weak legs it is still not pretty, but coming up is much easier now that I can lift my legs more easily.
能夠上下一連串的階梯了
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她是我從網路上找到做了2次氣球擴張手術的MS病友 (目前有做到兩次擴張的經驗者不多)
我們可以知道幾件事情:

1. 靜脈是會再度狹窄的,而靜脈的再度狹窄會導致某些症狀的再出現,所以:證明了關聯的症狀和靜脈狹窄的連結關係

2. 和靜脈狹窄的相關連的症狀至少有a,疲累, b,下肢的顏色和溫度, c,吞嚥能力, d,認知能力, e, 平衡能力, f,下肢的力氣恢復 (我的經驗中就有了兩項)

3. 靜脈要如何才能不讓她再度輕易的窄化回來呢? 非得用支架才行嗎?-->這真的是傷腦筋的問題...

因為手術在同一個病人身上重複了兩次,前後的對照,就可以初步結論。實驗的 再現性 就是相當有利的證明。

I had the pleasure of attending a symposium on CCSVI in Brooklyn, NY on July 26th. The auditorium was filled with Interventional Radiologists, a few, a vascular surgeon or two, and about 30+ CCSVI patients who also have MS-like symptoms.
她在7/26參加了在紐約布魯克林所舉辦的CCSVI 研討會:
該研討會有來自 放射醫師; 神經醫學醫師; 靜脈手術醫師; 還有超過30位具有CCSVI的病人(這些病人也有著MS的症狀)
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2010年8月2日 星期一

從印度做完手術3週的病友經驗分享


腳微顫情形消失,不再僵硬,睡眠變好Deep sleep,覺得累的時候也不感到眼睛後方有疼痛的感覺,腳和頸部疼痛情形消失....

http://www.youtube.com/watch?v=AnBd6P5rgjw&feature=related
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一個荷蘭病友的手術前後紀錄

Bernard Groningen 的經驗
供大家參考

手術前-1


手術前-2 主角Bernard Groningen和另一位靜脈擴張完的病友現身說法(他也和正常人無異 Oh My God!)



主角Bernard Groningen 手術後-1 差很大!


主角Bernard Groningen 手術後-2 持續紀錄 依舊


主角Bernard Groningen 手術後-3


主角Bernard Groningen 手術後3星期 -4


這段影片當中,主角有提到:恢復的進程為一緩慢漸進式的,2天壞,1天好 ; --> 1天壞,2天好
依舊可以行走,也可以小跑步。

大家看看吧!
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